Forum 2nd trimester

So much uncertainty, so much doubt

13 replies

OnzekleinespruitGuest ·
Hi everyone, I hope I can share my story with you all and that you might be able to reassure me a bit, since I tend to be a bit of a doom-monger.

My pregnancy has been anything but smooth sailing, from the first blood test right up to now at 21 weeks. The day my GP told me I was pregnant, there was already a catch: 'Congratulations, you're pregnant, but your pregnancy hormone levels are so low that this is probably not a normal pregnancy.' From joy to immense sadness. Later that afternoon, my GP called back to say that after consulting with the gynecologist, it was likely a normal pregnancy after all, but that I was just less pregnant than they had thought. Back to a little bit of hope.

At 6 weeks, I had my first appointment with the gynecologist: Besides the gestational sac and the tiny flickering light that was supposed to represent the heartbeat, I also had a 5 cm cyst and found out that I suffer from PCOS (cysts on the ovaries resulting in reduced fertility). But hey, I was pregnant and everything seemed to be going well.

On the next scans, at 9 weeks and 12 weeks, everything looked perfect; we had nothing to worry about. We got the papers for the NIPT and were eager to find out the gender. Attempt 1 of the NIPT: Too little fetal DNA, so we went to give blood again and completed attempt 2. Result of attempt 2: Too little fetal DNA, and based on that result, the university hospital recommended an amniocentesis. My gynecologist reassured me that everything on the 12-week scan was perfectly fine, that I am young and healthy, and that there was no reason for an invasive method like amniocentesis. Of course, you trust your gynecologist, because that's what they're there for. There was no further explanation as to why the NIPT didn't work for me.

At 16 weeks, I had an appointment with the midwife. She was going to show us the gender, everything seemed fine, and after a long search, we finally got a view of the gender. Due to the absence of a penis, she concluded that it was going to be a girl.

Feeling reassured, we went for a detailed scan at 20 weeks and 5 days. The first images seemed fine, but when I asked: 'It's still a girl, right?', they went back to searching for a clear image where the gender was visible. After 15 minutes of trying, I saw worried looks on the faces of both my gynecologist and the midwife: They couldn't say for sure what it was. The labia looked too big and thick to be a girl, and for a boy, it didn't look like a penis and testicles at all. Furthermore, she also noticed a bulge under the navel that she couldn't explain. That's when the alarm bells started ringing. With worried faces, they told me I should better get a scan done at a university hospital and possibly have an amniocentesis. Cautiously, they also started talking about chromosomal sex abnormalities that can occur and that we need to get a complete picture of what we might be facing.

So here I am at 3 AM, haven't closed my eyes, and all I'm doing is crying. Tomorrow I'll know more when I have an appointment at the university hospital. The uncertainty it brings is simply terrible. For a week now, I've been feeling our little sprout move, which makes the news even worse. My husband says I'm overthinking and that I should wait and see what the scan says, but the worried faces of the gynecologist and midwife are running through my head.

As mentioned at the top, I'm a doom-monger and think the worst... Suppose it has an abnormality, what do we do then? From the beginning, we said that in case of an abnormality, we would terminate the pregnancy, but indeed, easier said than done. From the moment you feel your baby, you feel that there is life, but considering our lives, I know we can't handle a child with an abnormality, but can I go through with a termination? Mentally and physically, this seems like something that scars you for life, and how do you just continue with your life after that? The worst part is that right now I just feel like a failing woman, who can't even give her husband a healthy child. I'm disappointing my whole circle.

Waiting and seeing will be the message

Replies

  1. ---- #2

    What a heavy story, girl. I’d really like to reassure you, but I’m not sure I can. I think you really have to wait for today’s ultrasound, but it’s so weird that they couldn’t do the amniocentesis.. it’s really frustrating, I can totally imagine that because I had a similar experience myself, only it ended badly for me and we had to terminate the pregnancy at 18 weeks because our baby turned out to have trisomy. It’s terrible, I felt the little one move from 16 weeks onwards, so it was soooo hard to say goodbye, but we had decided beforehand that if the baby had disabilities, we wouldn’t bring it into the world. There are different opinions on this, but we thought it was best for the little one and for us too.. so I understand your choice if something is wrong with the baby.
    I hope from the bottom of my heart that it turns out okay for you after all, or at least a "limitation" that the little one won’t suffer from later and can live a normal healthy life. Good luck today
  2. ---- #3

    And by the way, you don't have to feel like a failing woman, okay? I felt that way too... but there's really nothing you can do if the baby has an issue; it's just a mistake by nature that you have absolutely no control over. So please don't think like that, because that makes things incredibly hard for yourself!!
  3. Orchidea #4

    First of all, wow, that's intense. I'm so sorry you're going through this; these are not the things you want to hear during your pregnancy. It sucks that they initially said everything was fine during the early scans, but then it turned out differently at the 20-week scan. At least, I think you should wait for the next scan. I hate to say it, but speculating right now about what might or might not be wrong just feels more overwhelming for you. Anyway, take it easy, let it sink in, and keep talking about it. Trying to shut it all out isn't helpful here. Sending you lots of love, and hopefully, you'll know where you stand soon!
  4. Onzekleinespruit started this #5

    Went to UZ Brussels today for an extra detailed ultrasound and amniocentesis. The gynecologist’s suspicion was confirmed: ambiguous genital development and bladder dysplasia. On Wednesday, July 4th, we’ll know more whether it’s a genetic abnormality (in which case our choice is made to terminate the pregnancy) or purely a physical limitation that can be surgically corrected. For the latter, we’d sit down with a pediatric urologist to discuss our options, but honestly, I have little hope that things will turn out well for our little sprout. Do I really want to subject my child to this path of suffering? One surgery after another, if it’s even operable. According to the gynecologist, it would be a girl, but with abnormal external genitalia, and possibly no uterus or ovaries (can only be checked at 26 weeks). So where on earth do we even begin?

    This isn’t exactly what I expected from being pregnant—no carefree moments at all, and constantly having to cry because of the uncertainty. I also don’t know how to cope with this. Meanwhile, I feel my baby alive inside me, but soon I’ll have to make a difficult decision. Even if you had to terminate your first pregnancy at 22 weeks, it still means going through a normal labor: hours of suffering, both physically and emotionally, only to go home empty-handed. It seems so inhuman, and how do you ever get over something like that? Still, they assured me at UZ Brussels that if the pregnancy needs to be terminated, it can happen relatively quickly, and they’ll guide me through the whole process.
  5. ---- #6

    Pff, that's so intense and hard to hear
    It's a decision you both have to make together, and it won't be easy, but you need to do what you think is best for the little one and for yourselves, of course, because you're the ones who have to take care of this baby, not anyone else.
    And regarding ending the pregnancy, you do have to give birth, and it's intense... I've been through it too, as I mentioned earlier, I had to give birth and had a painful and long labor, but I got through it. Nothing is impossible, but it remains an intense experience in your life.
    Wishing you lots of strength during this difficult and tough time!!!
  6. MamaN #7

    Hey, I don't have any experience or advice, but I just wanted to give you a (virtual) hug for what you're going through right now. Wishing you lots of strength
  7. Orchidea #8

    Wow, that’s really intense. Good that you’re talking it through and discussing the options. This pregnancy will always stay with you, of course. But with the right support, you’ll get through it. I hope you make the right choice for yourself. I wish you so much strength with this, and stay strong! Lots of love.
  8. Onzekleinespruit started this #9

    Just a quick update on the past week. With our diagnosis, we sat down with several specialists to discuss what the prognosis would be if we decided to keep the baby. Every specialist gave us the same advice: keeping the baby means a path of immense suffering, a life spent in a hospital with many surgeries for the rest of your life. Each specialist saw me break down time and again because there is simply no solution. Everyone advised us to terminate the pregnancy and later try for a healthy child, since the condition isn't genetically linked and, due to its rarity, the chance of it happening again is practically non-existent. Still, hearing that news over and over again is so hard.

    We had already decided for ourselves that if our baby were to suffer for life, we shouldn't be selfish but had to let go. After all the conversations, this became our final decision, and we knew it was the right one. Honestly, it's not something I ever really considered when we first found out we were pregnant. What was supposed to be such a beautiful time turned into a real nightmare for us. I thought I'd just need to make sure our baby didn't have trisomy, that I wouldn't gain too much weight, and that I could enjoy the rest of my pregnancy (actually the most beautiful time of your life). But enjoying it never happened; only the suffering and the grief that comes with it.

    On 4/7/18, our baby will be born, and I can finally meet the little kicking miracle in my belly that I love so much, but I'll also have to say goodbye to my baby right away. Yesterday, I had to take pills at the gynecologist's office to prepare my uterus for labor; it felt like I was killing my baby by doing that. On Wednesday morning, I'll be induced, and this pregnancy will come to an end. After being pregnant for 23 weeks, we'll be left with empty hands and a lot of grief.
  9. ---- #10

    This isn't the news I had hoped for you. It's terrible, awful, and the most painful thing a mother can go through, because you're just a mom. A mom of an angel who will always watch over you.

    It's the right thing to say goodbye to the baby; you want to spare this child a terrible life, and that means love, being strong enough to say: no, I don't want you to have such a life. It's incredibly heavy, but try to enjoy the little one after the birth as much as you can. Take photos, cuddle the little one, try to build as many memories as possible in a short time. Because this is the only thing you'll have left of the little one afterwards.

    Wishing you lots of strength and hoping the birth goes okay.

    P.S.: If you need to ask questions or anything else, you can send me a message; we went through the same thing.
  10. N.L. #11

    Oh my goodness, that's so intense... so much strength... wow you guys are really strong
  11. Onzekleinespruit#Noë Guest #12

    Wednesday I went in at 7:30 AM to induce labor. It felt so weird because I didn't want to go; I just didn't want to go through it, but I had no other choice. So I registered for admission on the maternity ward, and the first question they asked was: "Is it for a delivery?" With such a small belly, you have to say yes and know that you're here for the most difficult moment of your life.

    On the maternity ward itself, we were greeted to be guided to the room, and they did their best to minimize baby sounds. At 8:30 AM, the termination took place, such a painful moment... my baby was put to sleep. It was saying goodbye to her last kicks.

    Once back in the room, they started with Cytotec, 2 pills every 3 hours, max 5 doses. After 5 doses, an epidural, and 24 hours later, I still only had 1 cm dilation. How long could this possibly last? Their answer was max 3 days, 3 days of waiting to take nothing home with us. They decided to change tactics; I got an internal balloon to dilate the cervix in combination with hormones. After the 2nd dose of hormones, I was at 3-4 cm dilation, after which they decided to break my waters. Half an hour later, labor had started. Much less painful (physically at least) than I had expected.

    On 5/7/18 at 5:08 PM, our daughter was born, our beautiful little Noë. She was so gorgeous, her face was a mirror image of mine, and she had her daddy's big feet. We held her for a little while before having to give her back. We decided to say goodbye to her in the delivery room and not visit her afterwards because it would just be too painful. We also briefly looked at her anomaly to know if we had made the right decision, and yes, it was the right one; the anomaly was severe.

    Strange but true, after the delivery and back in my room, we were both relieved and at peace with our choice. We were sad, but not to the point of uncontrollable crying. Something the psychologists found strange; according to them, you're supposed to go through it. We had experienced so much uncertainty and sadness in the preceding weeks before making our decision, and for us, our processing had already partly begun. Not a single doctor or specialist said it would be worth it to go through with it.

    Today too, things are going pretty well with me and my husband. We lean on each other a lot and talk about it often. But the confrontation with newborns or pregnant women is hard for me and often makes me burst into tears again. I miss my daughter so much. We also arranged the cremation because that's the only thing we can still do, and those thoughts of cremation instead of ordering sugar candies are just hard and unrealistic.

    Somewhere inside, we also have the urge to get pregnant again soon, but not as a replacement, but because our desire for children is strong and we also have the right to happiness. Is this strange?

    Thank you for your support and listening ear.
  12. Orchidea #13

    What a story, I'm speechless. You're both incredibly strong. Such respect for you guys! I don't think it's weird that you want to get pregnant again so quickly; if the desire is that big, that's even very understandable. Give yourself the time to process this, it's no small thing. Wishing you all the strength, and hopefully it'll be a success soon for you both!
  13. N.L. #14

    Oh wow, that's really heavy to read. I hope the miscarriage helped even just a tiny bit.
    You're super strong and I completely understand that you're thinking about a next pregnancy. Don't suppress those thoughts; they're there for a reason. Take it easy like it's already been said above and spoil yourself and your partner good. Strength

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